Here We Go For Round Two at Children's Hospital

We’ve continued to see a daily decline in Tyler’s condition.It’s progressed to the point that when we called the neurologist yesterday, she agreed we should bring him back to the hospital for further examination and treatment. So here we go for round two at Children’s Hospital in OKC.

 

His tics now involve his whole body. He flails around dangerously, and we fear for his safety. His arms are bruised from whacking them on objects. He couldvery easily injure his head. Someone has to be constantly by his side to prevent him from injuring himself. We’ve even had to hold him down and restrain him at times just to keep him safe. Tyler has become so frustrated with his condition that he has broken down in tears multiple times over the last few days. (We have videoed him several times and have uploaded the clips to YouTube so Dr. Chrusciel could show them to other specialists she is consulting. If you want to see them, go to my YouTube channel at http://youtube.com/channel/UC3QYcmH7QiTDT6_poK5jyBg.)

 

Tyler has also completely lost the ability to communicate. He cannot intelligibly pronounce any words, not even single syllables. He wants to talk, and he tries to talk, but it comes out as gibberish. He also doesn’t have the coordination to write, so we’ve worked out a kind of sign language. One finger or two for when he needs to go to the bathroom. Thumbs up for yes. Thumbs down for no. When we still can’t figure out what he needs after a frustrating game of charades followed by a thumbs-up-thumbs-down game of twenty questions, we resort to going through the alphabet one letter at a time. When we get to the right letter he waves his hand, and we start spelling the words out one letter at a time until we figure it out. His most common sign since we’ve been in the hospital is two fingers walking—he wants to go home.

 

He’s also not eating. While this has been an ongoing challenge for a month, it’s even more troublesome now. I’m pretty sure it’s been about a week since he had any solid food, and even then it was just the occasional bite of ice cream. We have been making him drink at least one PediaSure at each mealtime, but even that doesn’t contain enough calories for his needs, especially considering how incredibly much movement and calorie burn he has every day.

 

All these considerations together create a quandary. His “tics” are so incredibly extreme, are we even sure this is Tourette Syndrome? What about the inability to talk? What would be causing that? Tics or meds or something else entirely? If he does have Tourette’s, it’s such an extreme, atypical case outside of the normal spectrum. That being the case, is it not also possible that his symptoms could be caused by an atypical something else that has nothing to do with Tourette Syndrome? Fortunately, we have a think-outside-the-box neurologist who was already asking herself, as well as leading experts around the country, the same questions before we were even admitted to the hospital.

 

When we met with Dr. Chrusciel this morning, she came in with a plan to start ruling out everything imaginable. The plan, as of today, has four components. First, she called in a consult today with a psychiatrist who will know best how the medications we have been trying have been affecting him, either beneficially or detrimentally. She gave Dr. Chrusciel some really good feedback and reassurance that she has seen similar symptoms in other kids with tics and that there are good treatment options available.

 

Second, Tyler will have a spinal tap tomorrow morning to identify any kind of encephalitis or tumors or other neurological problems the MRI didn’t show. The results will take several days at the earliest, so we will have to wait for that.

 

Third, they are also going to start an intravenous immunoglobulin infusion (IVIG). That is basically a treatment, somewhat akin to a blood transfusion, in which they inject Tyler with antibodies to fight off any possible auto-immune problems that might be causing Tyler’s condition. This treatment is a little controversial for Tyler since there are possible side effects to the treatment without a clear indication that he even has an auto-immune problem to treat. We are just guessing this might be a possible cause for Tyler’s symptoms. After much deliberation with several doctors on the subject, we decided to proceed with the treatment. It will take 3-5 days for him to receive the IVIG treatment while the hospital staff watch for possible side effects. The most likely side effects would be simple things like fever and headache. The more severe side effects are things like renal problems. At this point, we are willing to put up with a lot of things if only we can give Tyler some relief.

 

Fourth, they are going to give Tyler sleeping meds around the clock for a few days. He’s missed so much sleep lately, and when he’s awake he exhausts himself with the constant flailing. So the kid needs to get some rest, and so do we.

Overall, we have been very pleased with how things have transpired today. We also feel we are getting excellent care, and we are impressed by the quality and number of doctors that are directly involved in Tyler's care. Dr. Chrusciel has been amazing. Today, as she sat down beside Tyler, he was struggling to communicate some questions about what she had said about the plans for his treatment. Full of frustration, he began to cry. Dr. Chrusciel cried right beside him along with him, as did everyone else in the room. We can tell she truly loves Tyler and genuinely wants to do everything she can to see him well again. 

 

So, here we are back at square one. But for now, that feels like a really good place to be. Please pray that the doctors involved in Tyler’s care (and there are many of them) continue to be creative and are able to correctly diagnose and treat Tyler. Also, please be praying for our whole family as we handle another hospitalization that will last at least another 3-5 days.

 

Again, we thank you so much for all the amazing support you have given us. We feel all the prayers, and so many of you have offered help. Even if we haven’t returned your messages or texts or calls, please know we truly appreciate each of you who have reached out to us.

We will keep you posted!